kjdube

Did they test for gastroparesis? This is common with dysautonomia and with gastro you can have problem with fats as they are harder to digest.

Well mine came back abnormal at 16% so guess I'm going to have it out, going to see the surgeon Tues. Daisy hope you get well soon !

daisy, I also had a HIDA w/cck on Monday and waiting for the results. I had some pain and nausea during the CCK and was told that " they used to think that meant gallbladder disease" but in recent years determined that the nausea, pain can be due to cramping of intestines and stomach from the cck and not always coming from the gallbladder.

If I stay off certain foods like CHOCOLATE then its tolerable at best. Really miserable diet now since I already had many food restrictions to live with.

Hope you find answers soon !

Keli

Walking brings on my POTS symptoms big time. I can lift weights, do yoga, bike, etc but cannot walk far. For me its the worst exercise that I avoid whenever possible. Yes I get head pressure, dizziness, and eyesight becomes dark.

You deserve so much more than a man who doesn't care if you cry.

Great advice here. Get the best legal possible and don't be afraid to ask for help and support from friends and family. He sounds abusive and you may want to contact a women's shelter to see if they offer free counceling. They can also help direct you to legal and give advice to help in other ways, finances, children etc.

Take care and be strong!

Yes I've been weightlifting 15yrs. Never thought of checking my BP right after, I will try that. Can't do very much cardio. Even walking at a quick pace makes me dizzy. So I use weights for lower body and my weight bench for upper body. Also do stretching and abs.

potsgirl do you feel better when your bp is higher, after your workout?

I force myself to exercise as I always feel better afterwards, primarily I do weightlifting. Decided yesterday to take my BP before and then 15 min. after a 45 minute workout.

Before: 84/43

After: 126/74

This must be how normal people feel with good BP. Wish I could have that feeling of energy all the time !

I never have a day without symptoms. Some days are better than others tho.

I also have to limit carbs or I'll become sick.

I eat meat, fish and veggies. For breakfast I have (natural no preservative) sausage or some leftover meat along with black coffee, lunch is usually a big salad with tuna, chicken or turkey, and dinner is large serving of meat and veggies.

When I eat carbs my POTS symptoms increase, can't think straight, have brain fog and dizziness. If I keep eating carbs then I bloat, gain weight and feel miserable.

I love animals also and its conflicting to eat this way, I feel guilty about how we treat the animals we use for food.

I'm able to work full-time and its hard but I want to keep trying.

All I can do is work tho, it takes everything I have so I can't do much else.

I'm a little concerned about taking a huge does of Vitamin D because I react to EVERYTHING

I'm allergic to everything and I have VitD deficiency also. I take AllergyD by Twinlabs:

http://www.vitacost.com/Twinlab-Allergy-D3-Caps

Its not made from fish like most vitD and contains NO

Tablet binders, coatings, colorings, fish, soy, yeast, barley, wheat, lactose (milk sugar), and all milk, citrus and egg products, added flavorings, sugars, salt, artificial sweeteners, preservatives and salicylates.

I'm going on a weekend trip also and anxious about it. For me I have to pack my own food as eating wrong can set me off. I pray to make it ok in the car 5 hour trip there and then be able to function socially without being too miserable.

I'm anxious about the whole thing but DH wants me to go and I'm just doing it to make him happy. I never go anywhere far from home.

I don't know if I'll make work Monday.

Michelle hope you have a good time and feel good and have some fun!

Gentle shove...

Keli

Yes I have chiari malformation.

Your daughters symptoms are like my son when he was a teen, he has Chiari Malformation, please look into this. Pain in the back of neck, weakness, POTS, EDS, these are classic symptoms of CM. Please read more about CM and if you suspect it, insist on a brain MRI. Take care and I hope you find help for your daughter soon.

I would bring her to the doctor or ER right away before it gets worse. She probably doesn't want to go but as mom you may have to push her, make her go as these things can get serious. Shes too sick to make this decision even tho shes an adult. Getting pneumonia again could be dangerous.

Take care and have strength, hope shes better soon.

Keli

(son 22yo w/chiari and POTS, son 27yo w/chiari)

I have gotten past the point of needing them to understand. I know I have a real illness and I realize the most important thing is to take care of myself.

I'm sorry to hear that your parents don't have a clue. Its frustrating and hard to be young and not in control of your life. The quote above is great advice, don't let what others think bother you - you know the truth and know how critical it is to take good care of yourself.

Also... just wondering if you had a brain MRI... since eds and pots can be linked to chiari malformation.

I push myself to the limit, unless I'm passing out or throwing up or losing my eyesight then I don't quit... and even then I usually stop for a little while and then try again. Because if I don't exercise I'm homebound and unable to do much of anything. Sometimes I'm fine for the entire workout with no symptoms and other times with symptoms just a few minutes of starting the exercise.

How old is he ?

The best exercise I've found for my legs and POTS is weighted squats. If he has a barbell or hand weights they will need to be heavy enough that with 3 sets of 10 reps he can feel his legs are fatigued on the last set. At first he may use no weights depending on his fitness. If he has balance issues he will need a spotter. And maybe a trainer if he has no experience. There are also exercise videos for weightlifting, some have excellent instruction on form. And there are different types of squats that target specific groups of leg muscle.

Of course this is only if he's old enough for weight training. Riding a bike or walking on a treadmill is good... but only when I build my leg muscles by lifting weights do I have noticable improvement where it actually changes the quality of my life.

Another good thing about weight lifting is that it takes a very short time to do each day.

I had the surgery in 2002 and it was not painful at all (this is probably uncommon).

But it took 5 months to be able to walk again as dysautonomia and other problems afterwards prevented recovery. And all the chiari problems did NOT go away, in fact some things are now much worse.

They did not know at the time I had EDS and POTS, not to mention elevated intracranial pressure. The ICP is worse since the surgery and now I am at risk of losing my eyesight -- although these things could have excelerated faster without surgery and there is nothing anyone can do to fix my problems.

I had opinions prior from several chiari experts. Some of the doctors could not believe I could even walk, much less be physically fit, and all said the surgery was necessary to prevent further damage.

My advice is to go to the best you can afford, if you can go to the Chiari Institute in NY, Dr. Lazareff in CA, Dr Oro in CO, Dr Frim in IL, Dr Bejjani at UPMC, Dr Ellenbogen in Seattle, or Dr Heffezz in WI, these are some of the top chiari specialists.

Also if you have kids better have them checked. All of my children have chiari also. Join the chiari support group, you will learn much from this group..

http://health.groups.yahoo.com/group/chiari/

Take Care

Keli

During the application process for the grad school program I would not discuss your illness. Once you become a student you can disclose this, and they will provide you access to a disability service at that time and can accomodate you if needed.

To this question, I would answer "no".

"Have you had any physical or mental illness or identified learning disability that may affect you in meeting the demands of a rigorus program in graduate study or work in ministry?"

Keli

If you search on the web, there are many who have been diagnosed with chiari, POTS and EDS, take a look on the various chiari support group sites, theres tons of discussion of this including experiences of those who participated in various research for the conditions also.

On this list, I haven't seen alot of members with chiari, although I suspect some may have it on this board but not diagnosed.

POTS is commonly found with chiari, also EDS.

I was diagnosed with a vit D deficiency.

I don't take supplements but make sure to get sunlight, I feel much better the more sun I get. And I especially notice a big change in my digestion for the better after being out in direct sunlight, such as sitting on my deck on a sunny day. I have less gastroparesis and constipation, it is a noticable difference and repeated experience each time I've stay out for a long period in the sun, where it brings me almost to the point of sunburn.

Nystagmus and POTS can be associated with chiari malformation. I have both also.

Dizzygirl,

Sorry to hear of your head pain and other symptoms. Here's a group that has helped me, and mightymouse mentioned, you may want to subscribe to it :

http://health.groups.yahoo.com/group/chiari/

Have you had your ICP pressure checked ?

This can be dangerous if its elevated, especially in chiari patients.

I hope you see the dr very soon !!

Keli

I'm on inderal and I can honestly say its made a huge difference in the quality of my life. Before using it my heart rate would flux constantly leaving me dizzy and weak, feeling miserable.

I take the regular 4 hour type, not the LA as I want my heart rate to increase while exercising, etc. This way I have control of when and how much I need, as I have 20mg tablets and usually take up to 4 at a time depending on symptoms.

My son has POTS also and he took his first dose of beta blocker before bed one night. I remember he woke up the next morning and said "this is the best I've felt in years".

So we've had great results with a BB... but as for anything... YMMV.